Discussions By Condition: Rare Disases

Bullousa Pemphigoid

Posted In: Rare Disases 7 Replies
  • Posted By: susanne
  • August 16, 2007
  • 02:36 PM

Just wondering if anyone has heard of this? Blisters usually apperars on body, but in my case just my gums and inside of cheeks. Would love to hear what treatments you have tried. I have tried steriod injections and creams but nothing helps..
Thanks Susanne

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  • Just wondering if anyone has heard of this? Blisters usually apperars on body, but in my case just my gums and inside of cheeks. Would love to hear what treatments you have tried. I have tried steriod injections and creams but nothing helps..Thanks Susanne Well, I have cicatricial pemphigoid (also sometimes called mucous membrane pemphigoid). Not bullous, but close enough. I did have bad mouth sores at first. Steroids caused me nothing but trouble. I've looked up the effects and side effects of all the standard meds, and they are horrendous. Steroids are terrible. The others are worse. Of course you have to weigh their risks against how sick you are, but I've been trying a variety of alternative approaches and getting gradually better, over the course of about 16 months, without being able to credit any one thing for the improvement. Many people believe the problem is heavy metals, especially the mercury in amalgam fillings and in vaccines. There have actually been reports in medical journals of pemphigoid flareups being triggered by various meds and vaccines. One of the first things I did was get my last two remaining mercury amalgam fillings removed, and that did seem to help. I then spent some time looking into methods of chelating mercury from the body, and finally decided that the safest might be cilantro, so I bought some of it from the spice shelf at our health food store, and started putting it into capsules and taking one with each meal. It may be coincidence, but as soon as I started taking it, about a week ago, my dry eye problem, which had been part of the picture for over a year, suddenly disappeared. Others think that all autoimmune diseases have something to do with gluten intolerance. In this situation, with standard medicine offering no cure, just devastatingly harmful medications, I try anything that I don't think will hurt me and that might possibly help. So I've been on the gluten-free diet for a few days. Even though it's bad to try two things at once, because I won't know which one is helping, I'm also in process of trying Chinese medicine, including acupuncture and herbs. Started that two days ago. At age 73, I don't have time to wait around to get well. I tried one session of chiropractic, with mixed results. Tabled that for now. I also tried various dietary changes that didn't help at all, so won't bother to list them. Have you seen the website of the International Pemphigus & Pemphigoid Foundation, www.pemphigus.org? It's excellent, a bit complicated to navigate, but worth the trouble. I hope this helps get you started.
    AgnosticJaz 23 Replies
    • October 3, 2007
    • 02:23 AM
    • 0
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  • Well, I have cicatricial pemphigoid (also sometimes called mucous membrane pemphigoid). Not bullous, but close enough. I did have bad mouth sores at first. Steroids caused me nothing but trouble. I've looked up the effects and side effects of all the standard meds, and they are horrendous. Steroids are terrible. The others are worse. Of course you have to weigh their risks against how sick you are, but I've been trying a variety of alternative approaches and getting gradually better, over the course of about 16 months, without being able to credit any one thing for the improvement. Many people believe the problem is heavy metals, especially the mercury in amalgam fillings and in vaccines. There have actually been reports in medical journals of pemphigoid flareups being triggered by various meds and vaccines. One of the first things I did was get my last two remaining mercury amalgam fillings removed, and that did seem to help. I then spent some time looking into methods of chelating mercury from the body, and finally decided that the safest might be cilantro, so I bought some of it from the spice shelf at our health food store, and started putting it into capsules and taking one with each meal. It may be coincidence, but as soon as I started taking it, about a week ago, my dry eye problem, which had been part of the picture for over a year, suddenly disappeared. Others think that all autoimmune diseases have something to do with gluten intolerance. In this situation, with standard medicine offering no cure, just devastatingly harmful medications, I try anything that I don't think will hurt me and that might possibly help. So I've been on the gluten-free diet for a few days. Even though it's bad to try two things at once, because I won't know which one is helping, I'm also in process of trying Chinese medicine, including acupuncture and herbs. Started that two days ago. At age 73, I don't have time to wait around to get well. I tried one session of chiropractic, with mixed results. Tabled that for now. I also tried various dietary changes that didn't help at all, so won't bother to list them. Have you seen the website of the International Pemphigus & Pemphigoid Foundation, www.pemphigus.org? It's excellent, a bit complicated to navigate, but worth the trouble. I hope this helps get you started.Hi and thank you soooo much, this is by far the most information I have ever gotten. I will give you my email adress right here, I would so love to ask you some more questions, I understand if you dont want to give out your email. Thank you so much again. Withalessing@yahoo.ca
    susanne 3 Replies
    • October 3, 2007
    • 07:52 PM
    • 0
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  • Hi and thank you soooo much, this is by far the most information I have ever gotten. I will give you my email adress right here, I would so love to ask you some more questions, I understand if you dont want to give out your email. Thank you so much again. Withalessing@yahoo.ca Hi, thought I'd post again and let you know that I did try emailing to the above address on Oct 5, but haven't heard back from you. Maybe one of our ISP's is blocking the other? That did happen to me once, but with a different company. If you post again, maybe we can communicate via this board.
    AgnosticJaz 23 Replies
    • October 9, 2007
    • 03:49 PM
    • 0
    Flag this Response
  • Well, I have cicatricial pemphigoid (also sometimes called mucous membrane pemphigoid). Not bullous, but close enough. I did have bad mouth sores at first. Steroids caused me nothing but trouble. I've looked up the effects and side effects of all the standard meds, and they are horrendous. Steroids are terrible. The others are worse. Of course you have to weigh their risks against how sick you are, but I've been trying a variety of alternative approaches and getting gradually better, over the course of about 16 months, without being able to credit any one thing for the improvement. Many people believe the problem is heavy metals, especially the mercury in amalgam fillings and in vaccines. There have actually been reports in medical journals of pemphigoid flareups being triggered by various meds and vaccines. One of the first things I did was get my last two remaining mercury amalgam fillings removed, and that did seem to help. I then spent some time looking into methods of chelating mercury from the body, and finally decided that the safest might be cilantro, so I bought some of it from the spice shelf at our health food store, and started putting it into capsules and taking one with each meal. It may be coincidence, but as soon as I started taking it, about a week ago, my dry eye problem, which had been part of the picture for over a year, suddenly disappeared. Others think that all autoimmune diseases have something to do with gluten intolerance. In this situation, with standard medicine offering no cure, just devastatingly harmful medications, I try anything that I don't think will hurt me and that might possibly help. So I've been on the gluten-free diet for a few days. Even though it's bad to try two things at once, because I won't know which one is helping, I'm also in process of trying Chinese medicine, including acupuncture and herbs. Started that two days ago. At age 73, I don't have time to wait around to get well. I tried one session of chiropractic, with mixed results. Tabled that for now. I also tried various dietary changes that didn't help at all, so won't bother to list them. Have you seen the website of the International Pemphigus & Pemphigoid Foundation, www.pemphigus.org? It's excellent, a bit complicated to navigate, but worth the trouble. I hope this helps get you started. I just have to know if ANY of the alternative measures you mention are doing ANYTHING. I totally gave up on prescription meds and am ripe to try anything sane. I'm 61, in good health except for a nasty Bullous Pemphigoid condition (20 years or more). I'm a skeptic and a realist. I don't see any reason to load up on meds that can't cure the condition.....those steroids don't cure it, and in my case they barely improve symptoms. Only a topical steroid cream does any good. What about herbal, probiotic, acupuncture? Maybe at least I can have some fun with these while nothing is working. I have never met anyone who has this disorder, and all the searching that I do comes up "we prescribe steroids....which kind should we try on you". By the way, the IPPF site is that way and completely useless to me. Anything that you can share would be appreciated.
    AgentScully 1 Replies
    • September 9, 2008
    • 05:40 PM
    • 0
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  • Hi, thought I'd post again and let you know that I did try emailing to the above address on Oct 5, but haven't heard back from you. Maybe one of our ISP's is blocking the other? That did happen to me once, but with a different company. If you post again, maybe we can communicate via this board.Hi there. sorry but I dont remember the email. I havent been on this site in a long time Im just getting tired I guess of all the guess work, please try to send me another email, hope fully you will read this...
    susanne 3 Replies
    • September 12, 2008
    • 00:07 AM
    • 0
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  • I then spent some time looking into methods of chelating mercury from the body, and finally decided that the safest might be cilantro, so I bought some of it from the spice shelf at our health food store, and started putting it into capsules and taking one with each meal. It may be coincidence, but as soon as I started taking it, about a week ago, my dry eye problem, which had been part of the picture for over a year, suddenly disappeared. Thank you very much for sharing this. I had blisters and lesions in mouth, and associated puss in my eyes, which had been diagnosed by biopsy as possibly being bullous pemphigoid. I had it for 3 weeks without taking any medication, then I read this post, bought some fresh cilantro ('coriander' outside of US), ate a dozen or so stems a couple of times a day, and within a few days the puss in my eyes cleared up, and within 10 days my mouth blisters and lesions had completely disappeared. I also avoided gluten during this time. If this amazing result was from the cilantro, which I have a feeling it was, then this was a miracle cure for me. Thank you again for sharing your results!
    Anonymous 42789 Replies
    • September 7, 2011
    • 04:26 PM
    • 0
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  • I'm diagnosed with mucous membrane pemphigoid and have been on the paleodiet (gluten-free) for around 2 months now and will continue to eat accordingly - haven't seen improvements yet, however if it is indeed relative I believe it'll take time to see results. Reading the above posts, thought, I'm gonna try coriander as well and see if there are improvements.
    CaptainLiquorice 1 Replies
    • September 8, 2011
    • 05:52 PM
    • 0
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